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Not sure where to begin...newly diagnosed

Hi, this is my first post so not sure if I’m in the right place, but here goes. I had surgery on the 1st April for removal of ovaries and Fallopian tubes due to endometriosis. Op went well and I’ve been recovering. Tuesday, I get a phone call out of the blue from the gynaecologist who did my surgery to tell me that her report has revealed that from the tissue that’s been examined a blood cancer has shown up. She couldn’t tell me anything else. She said someone from haematology will be in touch and told me to ring my GP if I needed to talk. I rang my GP, he said that the cells have revealed a cancer of the lymphatic system and my case is to be reviewed at a MDT meeting. He couldn’t tell me when I would hear something. Since Tuesday I’ve not been able to function and spent hours and hours on google! Prior to this unexpected diagnosis I was well, I was tired but not extremely so and getting about with a busy life. I’m a 50 year old female. I’m just a bit lost at the moment. Sorry to offload. Thanks x

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Hi @Sassy12345, a great big welcome to our forum, you are definitely in the right place and it doesn’t matter where you post, the main thing is that you have had the courage to do so.
Perhaps it might be a good idea to ditch googling.
When I was 53 yrs old I also had a gynae op and that healed but I continued to feel really tired, rough and yukky.
The gynaecologist also did blood tests and called me back and literally said 'I have never had to tell anyone this but you have chronic lymphocytic leukaemia, go back to your GP and you will get a referral to haematology.
All I could see was the word chronic in great big zig zags in front of my eyes and I just kept saying those 3 words so I did not forget them.
I went home and wrote my will and funeral music.
That was 17 yrs ago and I am still here.
I was put on ‘watch and wait’ or ‘active monitoring’ which is regular blood tests and sometimes other tests.
Some people start treatment straight away and others at points down the line. I have been an extremely lucky girl and not had any treatment.
I was in complete shock for a long while and I felt in a bubble with the world going on around me, this new medical language I did not understand and still don’t !!!
We are here to support you and if you would like to talk to someone you can contact the Support Services Team on 0808 2080 888 (Mondays: 10am-7pm, Tuesdays-Fridays: 10am-4pm, Saturday, Sundays and Bank Holidays: 10am-1pm) or via email at support@bloodcancer.org.uk
Give yourself time and be really kind to yourself.
Please keep posting.

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Thank you so much for your reply, it’s so nice to know I’m not alone. I really appreciate your message x

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Hi @Sassy12345 me again.
I have found it useful to write down all my fears. thoughts, feelings, questions, practicalities, medical history, allergies, medications, family history because as soon as I walk into anywhere medical my mind goes blank. Then I can answer and ask my questions, follow up questions and make sure I understand what is being said to me.
I have also realised that each medical person looks at the speciality in front of them and that we are all unique, complex beings and it is up to me to remind them of allergies or other conditions I might have.
Take lots of care of yourself and there might be some useful information for you on the Blood Cancer UK website.

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Hi @Sassy12345, you’re definitely in the right place with a lovely and friendly community supporting each other. As Erica mentioned, google probably isn’t the best place to get answers if its not from reliable and established sources. Waiting to hear back is one of the most difficult aspect of managing what next, it’s understandable this is effecting you. We at the support service team are here for you if you would like to talk about how you are feeling and what you are going through.

Please don’t hessite to contact the Support Services Team on 0808 2080 888 (Mondays: 10am-7pm, Tuesdays-Fridays: 10am-4pm, Saturday, Sundays and Bank Holidays: 10am-1pm) or via email at support@bloodcancer.org.uk.

Kind Regards
Bav

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Thank you so much for your kind message. I can’t believe what’s happening, it’s like a bad dream, but reading everyone’s posts it doesn’t look as grim as I first thought. I appreciate the support, it means so much as I’m feeling confused and alone at the moment. Thanks again x

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Hi @Sassy12345 and welcome to the forum. Gosh, what a lot to even start to process with so little Information. The uncertainty and the unknown is so scary. Erica has given you some really good advice and I would suggest giving the support line a call. They will be able to help you think about all off the questions you need to ask when you speak to the consultant. Please keep sharing on here. We are all here to support you as much as we can. It’s such a shock for you and you need to be kind to yourself. Have you got support around you?

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I was diagnosed at 41 snd four years later still on watch and wait. It’s a different journey for us all but we all understand how you feel X

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Thank you for your message and kind words, it really does help so much. It’s nice to know I’m not alone and the support I’ve received from this group has blown me away, so thank you. I do have support, I’m single, no kids, but have a lovely boyfriend, however we’ve only been together 10 months so I feel bad saddling him with all this, but he’s been amazing. Thanks again x

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I’m sure he doesn’t feel that way. I think we all feel guilty for the impact on others but from my experience, and others I’ve spoken to, the people around us just want to be there for us X

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Hi @Sassy12345, your boyfriend does sound lovely and perhaps you are a partnership whoever is going through anything.
One thing I wish I had done was to ask my husband what was going through his mind, his fears, thoughts and feelings.
Might it help if he came to appointments (when you can) with you. I find it helps to have someone to take notes.
You say about being tired, I suffer from fatigue and my husband can see it in my eyes, I do not deal with what personally stresses me, it is all too much and I just flop and sometimes shed a tear. Being able to talk about these things means the other person does not feel they have done something wrong.
If you are looking to a longer term relationship perhaps these are times that actually bond you together, it is personal choice.
You are doing brilliantly, spoil yourselves.

That’s such great advice. We’ve spoken a lot and discussed all scenarios, from the really bad to the ok. As I don’t know what type of leukaemia I have yet, it’s still a guessing game as to what the future holds. We are very open and he said he’ll be with me every step of the way. Can’t help but feel bad for him though. Thanks again for all your support. Can you live a reasonably normal life with the condition? Only last week I was out walking all day, felt great, the difference a week makes! Sorry for rambling, I really appreciate the support and everyone on here seems so strong and together xx

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Hi @Sassy12345, perhaps if the tables were turned you would be right there for your partner, so you actually don’t have to feel bad, but that is easier said than done.
Actually nobody in this life knows what the future holds.
Personally, because I have never had treatment, I have learnt to manage the symptoms I was diagnosed with, mainly fatigue, I do not do evenings, so I am a Lady that Lunches, and sometimes I am known to have a nap in the afternoons.
When I worked I used leave or flexi leave if I was fatigued.
I was also a part time Registrar of Marriages, plus another full time job, and at the time I used to get very feint and unfortunately it was winter and I had to perform marriage ceremonies standing with my back to radiators. Not a good mixture, so I did stop that role. I also had problems standing in the rush hour on trains and tubes for journeys across London.
I have a really good quality of life and my diagnosis has given me the opportunity to assess what I want out of life, who with and what I want to do.
Before diagnosis I was going through life on autopilot, I did not notice architecture or nature, now I do, but this all takes time.
I realise how important family, friends, architecture, nature and music are and they are priceless.
I know myself so much better now, I know I do not deal with what personally stresses me well now.
I also know that my fatigue can be set off by me overdoing emotionally, physically or practicality.
We celebrate everything with shortbread and hot chocolate, I think treats are important…
However I do try to eat a bit more healthily, and I believe in fresh air and appropriate exercise. I am a Pilates girl and do a Pilates DVD every day.
My 70th birthday last year was my best ever and I chose my presents and got my Colin the Caterpillar cake.
The best things in life are free.
Life is what you make it.

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Thanks again for your positive and uplifting message, I really appreciate you taking the time to do so. This is such a great support site, thanks once again x

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Hi @Sassy12345 and welcome. I can only echo the comments of others about looking for information. If you go online, make sure that you use official sources such as the NHS or Macmillan where the information is likely to be reliable and also of course Blood Cancer UK support line are always fantastic as I think you’re beginning to find out. Let us know how you get on. When I got hit by extreme news like this i just tried to break it up and process it bit by bit and understand what the next steps were. Good luck!

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Hi Sassy, the advice given by Erica was excellent, I would add, keep chasing your GP, and your local Haematology Department up. Also your local Haematology Department, don’t accept delays, keep chasing. Think about yourself and not upsetting anyone. This may be another day at the office for some, but not you. Get a second opinion, then if necessary, and you can afford it, get a Private Health opinion. All the very best to you.

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Thank you for taking the time to reply, it’s very kind and also very helpful. Do you think it’s normal in your experience to have to wait for over a week for a diagnosis? It’s all very new to me so not sure what the norms are. GP just tells me someone will be in touch and it takes time! Thanks again x

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Hi @Sassy12345 how are you doing today? So sorry you’re going through what sounds like such a worrying time. Really glad you found this forum and that you’ve got such a supportive boyfriend.
I was wondering if you might find it helpful to take a look at this section of our website at some stage - https://bloodcancer.org.uk/understanding-blood-cancer/just-diagnosed/ as it’s written specifically for people who are awaiting diagnosis or have been recently diagnosed.
We’re only at the end of the phone on 0808 2080 888 if you want to talk anything through with us!

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Thanks Alice, appreciate your support it means so much. It’s the waiting that is affecting me, mainly my mental health. I’ve had almost a week now to read about different types and I’ve read a lot of people’s experiences which has been a godsend, likewise, this forum is amazing. Thanks again x

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Hi @Sassy12345, in my experience unfortunately it is certainly not uncommon to await at least a week for any results and often quite a lot longer, you have entered a situation of not knowing and waiting for others to do things and waiting is absolutely the worst feeling.
That is one of the reasons that we support each other on this forum.
However we often find we have to chase medical people. My experience is being very nice but also being assertive gets the best results if you get what what I mean.
I also keep a diary of events.
As I read recently it is a hectic job for medical people and it is our lives.
We and the support line are there for you.
Just take this time really looking after yourself and posting.
Anyone else able to share their experiences.